Surgery scheduled

In December when I was at my third ALS Clinic at Hershey, the doctor, nurse, and dietician all suggested that I have a feeding tube installed.  The doctor also suggested that I have a NeuRx Diaphragm Pacer installed at the same time.

I wasn't having any noticeable breathing problems then but I am now.  Also, I have been struggling to maintain my weight, which is becoming a losing battle.  I am down about 10 pounds.

As a result, I decided to go ahead  and have the surgery and am finishing up the presurgical testing tomorrow.  The doctor will do both surgeries arthroscopically and both devices will  stick out of my body.  Surgery is scheduled for March 3 at Hershey Med Center.  They keep you overnight to  make sure there aren't any complications and to teach you how to use the pacer.

In the case of the diaphragm  pacer, just a short cable and the lead that connects to the external power and control pack will extend.  They provide a 4 inch adhesive bandage that attaches to your side that the lead snaps into.  The lead has gold electrodes, so can go in salt water with it. 

They start you with 15 minutes several times a day to stimulate and strengthen your diaphragm muscles, building up over time.  The doctor told me it has been used by spinal injury patients for several years who would not be able to breathe without it, and Christopher Reeve was the second person who had the surgery.  Dr. Pauli trained with the doctor who did Reeve's surgery, and he now trains other doctors to perform the procedure.  For ALS patients they say it can add a year of life, on average. 

The PEG feeding tube will allow me to ingest nutritional formulas, water and other cold/room temperature liquids, and powdered or liquid supplements directly through the tube into my stomach.  Obviously you don't want to dump hot liquids directly into your stomach.  I will still be able to eat when I want, but the tube will enable me to make progress on my nutrition and hydration challenges without worrying  about aspirating food or liquids into my lungs.  At some point if I am no longer to eat or swallow, the tube will enable me to stay alive.

There are some risks.  They pump air into your abdomen for the arthroscopic surgery and some air remains in your chest.  Sometimes can collapse a lung and they have to reinflate it.  Worst case scenario is that the surgery  compromises your  system and have to have a tracheostomy and be on a ventilator, but that rarely happens.

Typically off work about 2 weeks.  There is some pain afterwards and they give you narcotic pain meds.  Have to be off them before you can drive a vehicle.  I'm not sure I will return to the office after that but may work remotely for a while longer.

I'm planning to take a few days off just prior to my surgery to visit with my brothers, who are planning to fly in to Pittsburgh and drive to State College.  My next clinic is scheduled for 3/11.